Decisions and priorities.

This week I made a decision. It wasn't a nice, easy, fluffy, reassuring decisions. Although when someone says "I made a decision" very rarely is it an easy decision to make. No, the statement of having made a decision usually means there was careful deliberation, careful thought and it wasn't an easy decision that could be jumped into quickly without much thought.
The sort of decision which require you to say that you have made a decision are never easy.

The decision I made this week was the sort of decision which leaves you feeling raw, like someone has furiously rubbing away at your insides with sandpaper. It was the sort of decision which leaves you exhausted, mentally and physically. The sort of decision which leaves year mind full, your heart heavy and your eyes wet. The sort of decision that leaves you with a hole in your gut, ready to be filled up with something but exactly what you're not sure.

What was the decision? That I can't go on as I am. That I am not willing to further sacrifice my physical and mental health in order to pursue higher education. Why is it such a big issue? Isn't it a fairly logical sensible decision? Maybe but to explain why it was so hard I need to take you back a little way to 2010.

In September 2010 I started a full time photography BTEC level 3 (for people out of the UK this is a vocational qualification considered roughly equivalent to A level exams taken at age 18). When I say full time what I mean is 3 full days per week in college, plus an hour or so travelling each way. I enjoyed it, I was doing well. But by October half term, having done 6 weeks at college, I was completely exhausted. I rested on my weeks holiday and not a lot changed, I was still exhausted and I still wanted to do my course. Being the stubborn person that I am I went back after the holiday, the travel plus the activity required in the course, plus some other big stresses meant that by November my health had completely crashed. I couldn't stand for more than a few seconds, I couldn't get upstairs to bed, pain levels skyrocketed and I couldn't cope with anything except minimal levels of light and sound. I got my first wheelchair. My immune system was shot and that winter I got virus after virus culminating in appendicitis in February and an infection in the surgical wound. The college did all they could to support me but I just wasn't well enough to go back and do the hours I would need to get the work done. I finally dropped out (after a very low attendance rate) in March.

I ignored what my body was telling me and things just got worse and worse. It took me two years to even get close to where I was in the Summer of 2010. It's a pattern that has repeated too, I ignore what my body is doing because I'm prioritising education and my health crashes. I lose function, I get more pain, I'm more anxious, I get more viruses the whole lot. Even if I'm just ignoring it for a short time like an exam period (see hospital stays summer 2011 and summer 2012). I'm not willing to go back there again if I can avoid it.

Right now I see a lot of the same patterns and symptoms occurring as happened in 2010. I'm gradually getting more and more exhausted; I'm having trouble with light, noise and people; I'm putting a load of pressure on myself; I'm falling behind in work; I'm losing some physical function; I'm getting really anxious and I'm putting education before my health. It is not okay for this to carry on and something has to change.

The problem is that when I'm at uni I need to do three sets of things. 1) Daily living tasks, which includes directing carers; it is a lot harder to do this at uni than it is to do it at home. 2) Academic work: reading, writing essays, attending lectures and tutorials etc. And 3) Do enough Social Stuff to keep anxiety and depression to a minimum. But I can't do all of them, it just hasn't worked - using every scrap of energy I've got I can maybe do half of what I need to do in each task (or one really well, half of another and none of the other one). I've had lots of support from all sorts of people and I've kept trudging onward, doing pretty well academically but not really looking after myself. This takes it's toll, when I don't look after myself I get more exhausted and more anxious so I can't think clearly and have difficulty attending lectures. I put all my energy into doing the academic work and I end up not being able to do the academic work. It's been a hard decision to make because I love uni and love what I get to do when I'm there and I know that prioritising my health will mean all of that is going to change.

Exactly what the outcome of this decision will be I'm not sure, I need to speak to my university support team to see what they can do to help me. At the moment it looks like the best case scenario is that I sit my exams later in the summer, stay mostly at my parents home and finish my first year just a little later than everyone else. I have no idea how possible this will be, whether it's logistically possible or whether I will have the energy to put in the work that I need to.
There are a whole host of other options too and the disability team may have ideas I've not even thought about.

So I don't really know what will happen. Right now I'm finding things to soothe my soul, to relax my body and unwrap my mind from the panic that has been buzzing about for some time. Having made the decision that I'm going to proritise my health and my enjoyment of life has freed me a little. I feel freer to breathe and freer to do what I both want and am able to do. I still feel raw and a little churned up inside but it feels better than before. And it feels an awful lot better than the prospect of carrying on as I was, of keeping bullheadedly ploughing on doing what I am "supposed" to be doing. It feels so much better than the prospect of crashing so hard I end up in hospital again or in a state where I'm not able to do any of the things I love.

It's not easy, it goes against my instincts, but it is much better this way.

Thoughts in pain.

Some days pain consumes me - it is my entire being. Even when I take my emergency pain medication (fairly heavy duty opiates) it's still my main thought, there is little to nothing else. Even when  my attention switches to something other than pain it doesn't happen spontaneously I have to really deliberately focus on something, even the smallest thing takes a lot of energy to focus on enough to actually do it; whether that is watching the TV, changing clothes, eating (which is difficult enough anyway) or finding a somewhat comfortable position. When I'm in that state sleep is still not an escape from pain, assuming I manage to fall asleep at all, I feel the pain in my sleep. Pain permeates throughout all of me. The pain in my sleep feels much worse than when I am awake, a testament perhaps to my brain's ability push aside & hide the full extent of my pain, it is scary - more than scary. When it happens I usually wake up crying out and too afraid to go back to sleep in case it happens again. Sleep used to be a refuge, the only time when pain was not a problem, but now it's something to be feared and to worry over every night.

Pain changes your thought patterns, it reduces your ability to think logically, it can stop you thinking of anything but pain at all. Right now for me it feels like swimming in a pool full of treacle; it's slow, it's hard work, it uses a lot of energy and there's no way I'm going to get to the edge right. It's taking me a long time to work out what I want to say, a long time to work out how to phrase it and an even longer time to actually sort out the mechanics of speech (and typing) then once I actually start talking I might find myself saying "umbrella" instead of "cup" because someone just walked past carrying an umbrella. Sometimes I just can't think at all. When I can't think I start to panic, some might think it's a strange reaction  but really imagine you're trying to reach for something but neither of your arms will move in fact imagine that they're not there at all and this is all a surprise. Suddenly your arms are gone and you can't do anything; wouldn't you panic? Well, there in my head there are no thoughts no movement of the arms of my brain I can't reach the information I need at all. And this starts the panic, I can't communicate anything, can't communicate what's wrong or how people can help. I'm locked inside my own head with everything I know just out of reach behind an impenetrable mud wall. So yes I panic, sometimes just rapid breathing other times it's huge panic attacks that leave me curled up in a ball until it recedes and then flat on my back for the next 3 or 4 days.

In these minutes, hours and days I lose myself. I can't find who I am, I don't know what I like, I don't know what I want to do, what I want to eat, if I need the loo, I lose everything. I think this is the most terrifying thing. All because of the effect pain has on my brain; on my mind. Pain is nasty, pain is all consuming, pain is punishing it pushes you to the limit and yet you continue on. You fight; you find yourself again; you try to live. Then you do it all again.