The Great Unease

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together.ย Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.


Just say YES

When I first decided I wanted to start a blog, I didn’t really know which direction to take as to what I wanted to blog about; there are so many facets to my life, I couldn’t narrow it down. I had written a blog a few years ago when I started running a vintage business and had some compliments on my writing style. I don’t know if they were just being polite but nevertheless, it brought about a confidence in me.

I guess most things in adult life are about having the guts to do something you’ve never done before. As Einstein said, the definition of insanity is ‘doing the same thing over and over and expecting different results’ I’m probably paraphrasing but you get what I mean.

I know too many people who do the same thing, day in, day out and complain that their life is unfulfilled. But, they haven’t actually taken the time to really sit and think about WHY their life isn’t what they had imagined it would be. They don’t consider that it is the choices they’ve made that have led them to the place they are now and another few scary but brave decisions may change their life for the better.

I’m not saying I’m perfect by any means. But, I do like to think having spent a fair amount of time in an introspective space, I have come out with a clearer knowledge of who I am as a person. As I was going through this period of ‘enlightenment’ (cue the sick noises!) I became much more of a yes person.

Crippled with Social Anxiety throughout my teens and early twenties my natural state was to avoid anything that may cause me embarrassment or even a small amount of attention. It stopped me doing a lot of things and it got so bad I spent 2 years hiding in my house rarely leaving it. I finally had had enough and decided I wanted more for myself, so I tracked down a few self help books on how to overcome social anxiety and even spent time (and a lot of money) having hypnotherapy sessions.

It took a while but I built up more and more confidence. I enrolled in some small adult learning courses and tried my hand at dressmaking and silver smithing. Slowly I came out of my shell and life started to feel a little less daunting.

A good few years have gone by now and while I still have mild social anxiety, it doesn’t rule my life. I took chances, I took risks, I thought ‘what the hell’ and did things I never thought I could do. I’ve walked down a catwalk wearing latex in a fetish club, I’ve talked about myself on the local radio, I’ve been in a tv commercial, I’ve run my own business, I’ve been published as a model, I’ve been immortalised as a comic book character.

All these things happened because I simply said YES.

What have you done lately?