Daily decisions

So here I am at university on a Sunday evening and all my housemates are across the landing having a cosy chat while I am sitting here on my laptop on my own, contemplating the life decisions we make. I look at the photos on my wall of friends and relatives and they remind me of some good times before I had any notion of what CFS/ME was.

Because I have a dilemma tonight. Should I get up and join them, or should I stay here and wind down to sleep? Joining them would involve my general ill feeling increasing and a possible very bad day tomorrow. Staying in my room would involve me feeling better health-wise but also very lonely and resentful.

And it is these kind of choices that now make up my daily routine. Being in a place with so many people who should be my peers really reminds me how different I have become. The decisions my housemates make are so different and if it was them, the answer to my above question would be easy and obvious.

It scares me how easily I can slip into this way of thinking. It takes one mistake, one reckless action and the rest of the day must be spent in bed. The possibility of me not eating later that day is very real, depending on how I look after myself in the morning. At 19 I should be impulsive, yet I am making the daily decisions of a much older person, and I miss something I never had. A number of older people have said to me that they think chronic illness harder on the young because if you get ill at 60, you can look back on your life (hopefully) with an attitude of having lived well. But for a younger person, your life has only just begun!

I am aware that I am feeling very sorry for myself this evening, partly because I am scared of starting my new term again tomorrow, so I shall try and include some positives.

I made it to church this morning for the first time since February, which of course was very tiring, but I really enjoyed going. I was thinking during the service how often we try to attribute blame and question the apparently bad things that happen to us. Sometimes we blame ourselves, sometimes we blame others and sometimes we blame God. And maybe God is to blame for some of the bad things that happen to us, but blame is the wrong word. I see these things as things that just happen in the grand scheme of things, but at least God has some control over it and can make it worth our while.

And as for questioning why bad things happen, we never stop and question accusingly 'God, why on earth did that go well? What did you do that for?'. Why do we really deserve such great and amazing things to happen to us? Even people who are considered very Godly have awful things happen to them. I'm not saying that we deserve for bad things to happen to us but I think that it is a healthy way of dealing with things that life throws at us to turn the knee-jerk reaction around.

Easier said than done of course.

19 going on 90 / Facing fears

This week I have been back at university. Lectures don't start until next week but I figured a week to settle in and get my bearings wouldn't be a bad thing.

Even after 9 months now since I relapsed (or crashed) I am still finding new aspects of being ill that I haven't come to terms with yet. And sometimes things I thought I had worked out turned out to not be so worked out as I had thought.

One of my cousins (who unfortunately is a bit dubious that I am sick at all) calls me 19 going on 90, which made me laugh at the time but which has come round to bite me eventually.

I am not a typical young adult. I spend most of my day in bed, not out of choice, but out of necessity. I can't walk for more than 10 minutes without serious repercussions later on so I can't join in with my friends with anything that involves leaving the house. I have to be in bed by around 10pm to allow for the 2 hours it will take me to get to sleep, and to prevent any groggy mistakes being made (I managed to burn myself this week because I forgot at 11pm that desk lamps that are left on become VERY hot!).

And what's the deal about being normal? I had actually prided myself in the past that I didn't just follow what everyone else was doing and did what I wanted with my life and my appearance. And yet now, I just want to be a normal young adult at university. I don't mind not going to numerous house parties, but being physically capable of doing my studies, and socialising and planning my future would be nice. But right now, I can't see past the end of the week, let alone my degree, let alone plans post-degree. How am I meant to get a job? Or study so I can get a degree-related job later on? My future in 2 years' time seems to involve going back to the parents' house and recovering the best I can for the 2 years after that.

And so today I have been facing up to my fears. The thought of continuing my degree, let alone looking after myself terrifies me. The people who are meant to help appear to be waiting somewhere out of sight, controlling the outcome of this venture from an office somewhere, while I am left struggling to put together a sandwich for lunch, partly because my brain is so muddled and panicky that I have forgotten to buy half the food I need. Everything just seems that little bit rubbish today, but hopefully things will pick up soon.