An apology to the universe !

A weird thing happened today.

We were making our way back to waterloo to head home after having a really nice stay in London. It is no lie that I find going to London for all the hospital appointments really stressful. It's not so much once we're there but I hate leaving Amelia-Rose and how disruptive it is to our family life. Travelling also takes a real toll on my body.

This time though we took Amelia-Rose with us! Work on the train line forced us to stay another night which originally I was resenting (costing us another £164 in hotel fees!) but we have had a nice family break away and going to hospital was a mere blip on the radar. The weather was beautiful too!

Anyway, I digress. On the way back up to the station we passed a woman in a wheelchair who was self propelling (insider speak for making herself go) and I gave her my best stranger beamy smile and she looked at me and completely froze me out! Actually, she looked really annoyed that I had smiled at her.

Now I am a beamy smile at a stranger kind a gal, I don't think it costs a thing to smile at someone and for some reason I just assumed this woman would smile back. But why? I don't expect 'able bodied' strangers to smile back, although of course it's always a pleasure when they do but I honestly thought this woman would automatically smile back. It didn't actually occur to me that she wouldn't... until she didn't.

Before we had our daughter my husband and I would go for long bike rides on beautiful days and I always loved the 'biker nod'. It's an unwritten rule amongst bikers that when you pass each other you nod. I just always thought it was very cool.

When this woman didn't smile back, in my head I got all 'Oh charmed I'm sure, nice, really nice' which I would never do if an up right stranger didn't smile back!

I was thinking about the whole scenario on the way home. It really bothered me how I reacted to this woman not smiling. I think there is a part of me that has this ideological vision of seeing someone else in a wheelchair and us sharing that all knowing smile and nod. Just connecting because we both 'get it'.

Unless you've had to be in a wheelchair for an extended period of time or have the knowledge you will be in that chair either permanently or when you go out for the rest of your life it's very difficult to truly grasp that concept. To a good 90% of the population if you are in a wheelchair you are invisible. To the people who see you many often have a true sympathy in their eyes. It comes from a place of compassion but how i would adore to not conjure that emotion in someone!

I wanted this woman to smile back. I think I almost needed her to smile back? Then it dawned on me that I was doing exactly what I don't like having done! I didn't pause for a minute, or even a second to consider how her day was going. I saw a woman who looked well in herself but was in a wheelchair.  I didn't think about how many people had walked across her path or looked down on her. I didn't consider that she was in pain, felt awful or may have had a rough night.

It was really silly of me and I am sorry for it. I put negative thoughts out there in the universe about this woman and that wasn't really fair! Needless to say I take them all back. Or rather I want to replace them with good ones!

The past three mornings we have had the breakfast buffet at the hotel, when we're in that situation I always prefer to propel myself in my chair, I am increasingly beginning to do it out in the street too as my confidence being in the chair grows.

A few times it has dawned on me that I am different to everyone now. Not in a negative way just in a different way. I think this is all part of my own personal acceptance of my situation.  I think my want for this woman to smile at me came from a want to find a place in the 'disabled community' or even to find it! It's bizarre because I don't want people to see me as different but I am definitely beginning to accept that, yeah, I am different.

I am learning about my physical boundaries and figuring out who I am within those. I am understanding that I can still be 'me' within those boundaries but that I am not the me I was 2 years ago. In a want not to label myself as able or disable I have perhaps denied myself moving along the road. I have maybe trapped myself in a stale mate? Clearly I am still not exactly sure what this is all about otherwise I could be more decisive in my writing but I feel like something in me is changing. That maybe I am beginning to identify that indeed this is all part of my identity.

Nailed it

Today was a really good day. I woke up at 4.30am (not a flying start to the day) took some pain killers and knew pretty much straight away that there was absolutely no way I was going to get back to sleep before my alarm went off at 6am but instead of getting irritated I snuggled deep under the duvet and watched some of my favourite content creators on YouTube.

There are so many inspiring people on there, if you can sift through all the pointless videos and get to the proper channels it's really being used as a platform for change now and I love that. My absolute favourites at the moment are EcoVeganGal, (www.ecovegangal.com) Jason Wrobel (www.jasonwrobel.com) and The Vegan Zombie  (www.theveganzombie.com) There are all of these videos of people trying to have a positive impact on our planet and their immediate world and it's really inspiring. It's actually making me think maybe I could turn my journey of health into a vlog as well as a blog. Just to put it out there for anyone else living with this condition. It would mean I could keep it going when my hands are too painful to type which would be fantastic.

I've been thinking about vlogging for a while but the idea of talking on camera fills me with dread! I do however have a real desire to share my journey living with chronic illness. I want people who are where I was 18 months ago to be able to read or watch and maybe feel less hopeless? I've also found it really difficult myself to read about other peoples experiences and how it effects them day to day because people either tend to write when it's going really well or when it's all falling apart and there is A LOT of in between that isn't captured.

I have been made aware that I associate my self worth with what I can do physically and I am working really hard to change that. I think because I feel slightly abandoned sometimes which only began when I was unable to physically give to other people it's had a real affect on my confidence, perhaps more then I have been willing to identity.

It isn't about being all happy clappy and look at what I'm achieving despite my body working against me so much but I suppose 'This is what it's like'. It's really difficult to be honest with people around you (and yourself) when you're ill ALL the time because you can end up sounding like a broken record and some people believe it can't possibly be as bad as all that! I think when you live with a genetic disease it goes against this need in our society for people to 'get well', by having a chronic illness you are going against peoples desire to see you return to full health and that can feel really judgemental sometimes. Like, really, do you think if there was anything I could do to make this situation better I wouldn't be doing it?

All that being said though it really makes you strive to find things to be passionate about and I think if you can learn to channel that passion into something positive then you can begin to heal the hurts of  not really knowing what you have to offer people anymore. I know for me personally is perhaps one of the biggest emotional injuries of this time in my life.


I am also right at the very beginning of my journey and although I've been on crutches and my hips have been painful for 20 months now (and I have had painful health complaints for the past 10 years) I literally just got diagnosed so I feel like now seems to be like the perfect time to start cataloguing this in a variety of places. I know I have many life lessons to learn and I think I like the idea of being able to look back on those in years to come when hopefully I am doing a much better job of managing this.

It is making yourself really vulnerable though and I don't know anyone who would do that without any thought going into it, I just, I suppose I'm feeling drawn to creating a really honest project that might promote understanding and acceptance for other people living with chronic illness and disability... we'll see.